I would have to say I am surprised as well that people would put symptoms that would matter out there; I mean other than an upset stomach, cold or flu. While at the same time makes me wonder how much of this information will be accurate and how much of it will be found on people social pages that are just trying to get attention or see if they can get a reaction out of people. So many people today cry wolf just to get attention when they are completely fine for the most part. Tell me how much would you believe on the internet?
I would have to say this is a very interesting topic and idea to use social media to get information about side effects and symptoms of medication patients are taking. While the question has been brought up which media is getting the most information, either it be Facebook, Google+, Twitter or another form. While this is an easier and cheaper way to get this data instead of waiting for Dr. Offices and hospitals as patients report this information. The only problem I can see with this is that how many people on the internet stretch or embellish the truth about their symptoms? Makes me wonder how accurate the data is, where as if they go to the Dr or a hospital then it is a real symptom and concern and has been evaluated/confirmed by a medical professional. If this information is taking and can be used to better any medication then I am all for this practice.
Good point Mitch; people are most definitely more sensitive in regards to their health records. Having work at a Hospice for awhile, I know first hand how tedious record keeping can be for healthcare and to be honest, I feel like the biggest aspect of privacy relates to how people feel about their conditions (some embaressed, sad, etc.) and don't want others to know for those reasons.
But yeah, nothing spells privacy louder than large quantities of money, either. But with good reason. If people know you have the money, they will expect you to not be the cheap one in the room. Most people forget that it's being diligent about spending that helps to retain the large dollar amounts.
Joe, I'm not surprised that most of the action happens on dedicated health forums. There are security issues involved, after all -- perhaps the ultimate security issue, as people are more sensitive about health information than anything else, with the possible exception of large sums of money.
You'd think there would be, but I'm amazed at how many people do share their symptoms, illnesses, and conditions on social media, or those who join support groups using Facebook for their log-on. Personally, that would drive me away! The ability of these tools to anonymously collect info from so many people is a really great way to bring forward researchers' initiatives by days, weeks, or years; they can gather so much more information than they could by other means, even when you weed out bad data.
Researchers began with health-specific, pharma-hosted websites but are now seeking to broaden the scope by using big data to integrate feedback that patients post on social media sites. Of course, this creates many challenges--validity, accuracy, privacy among them. These early studies seem to indicate that accuracy and validity are good, which tends to show these forms of communication hold promise for broader participation and faster insight.
FWIW, and things may have changed since then, but based upon the sessions I sat in on and the conversations I had at the Bio-IT Conference in Boston earlier this year, most of the focus has been on dedicated health forums -- with serious studies only beginning to be made on major sites like FB and Twitter.
Is there any indication what channels work best for Internet patient-reported outcomes? Does it work better using apps, over a dedicated Website, using social media, email, texting?
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